What is life like for people with learning disabilities in Japan and how do they experience ‘belonging’? A visit allowed people to swap stories and find out, says Jan Sunman
Three jet-lagged academics, a self-advocate and a family carer sped bleary-eyed down a highway from Kansai airport into Osaka. Our impressions on arriving in Japan were of a densely populated country, every scrap of land used and small flats cheek by jowl with businesses and industry.
We observed how unfailingly polite and helpful Japanese people were. The young man deployed to support our self-advocate colleague as part of the airport’s disability assistance programme looked after us all, guiding us and helping us buy bus tickets. Our visit was part of a research project to explore experiences of “belonging” for people with le arning disabilities and their families in the UK and Japan, led by the Open University and funded by the Economic and Social Research Council.
It came about after Hiromi Moriguchi, a researcher at Tenri University, gave a presentation on self-advocacy in Japan at the Open University’s 2018 Social History of Learning Disability Conference. A few weeks later, the Economic and Social Research Council called for projects to support the establishment of UK/Japan research networks.
Our project addressed three questions:
● What does “belonging” mean to people with learning disabilities and their families in Japan and the UK?
● How can family and self-advocates work together in the two countries?
● How are services organised in both countries, and what good practice can be shared?
We wanted to learn how cultural differences affected these issues. Our Japanese colleagues were keen to explore inclusive research as there is no tradition of involving people with learning disabilities as co-researchers in Japan, so we set up inclusive teams of academics, family advocates and self-advocates in both countries within this project.
The UK team were: Liz Tilley, an Open University researcher; Sara Ryan, a parent activist and University of Oxford academic; myself, a parent activist from Oxfordshire Family Support Network; Ian Davies, founder of Northamptonshire People First and the National Forum of People with Learning Disabilities veteran, who has a learning disability; independent researcher Jan Walmsley; and Liz Ellis, a researcher at the University of Highlands and Islands.
Moriguchi’s team included: Japanese social policy expert Hiromi Tanaka; Chie Kasahara, associate professor at the University of Sophia in Tokyo; Marin Fujino, a PhD student whose brother has learning disabilities; and Azusa Omori and her 18-year-old son, Shun, who has a learning disability, who are together campaigning to improve self-advocacy and further education.
Each exchange lasted five days and was built around visits to organisations and services, research presentations, workshops – and lots of eating and drinking. The UK visit, the first, prompted Japanese colleagues to reflect upon the complexity of translating the term “belonging” into Japanese and difficulties in building capacity for self-advocacy and inclusive research in Japan.
This exchange indicated some differences between the two countries that we were keen to explore when we visited Japan, notably employment rates for people with learning disabilities and how welfare is organised. We had a full agenda in Japan. We visited three universities, a “work centre” (that provided training and some work), a group home, a social club for people with learning disabilities and their families and day services, including one in a rural area. We met people with learning disabilities, their support workers and family carers. We gave presentations at seminars and workshops with our Japanese colleagues. Our working relationships were cemented during conversations over wonderful meals and visits to shrines.
As a family carer, I was keen to learn whether Japanese social policy has lessons for us. How do people’s daily lives compare with ours? Do people with learning disabilities and their families have a strong voice in developing social and healthcare policy in Japan? How does Japan support the human rights of disabled people?
A lot in common
As family carers, we have a great deal in common. We are united by the same fears about the future of loved ones when we pass away. I met an older carer who had battled to get her son moved from a group home far away to one closer to her home. She did this with the support of a group that met in Tokyo, comprising social care workers, advocates and family carers. Younger families I met were beginning to press for greater inclusion in education and much more personalised support, although there was still reticence about advocacy. Culturally, pressing for the rights of the individual went against the grain.
I saw inspirational work by family members, such as Azusa Omori’s i-LDK Super-College, set up to help young people gain life skills, which plans to train businesses about diversity, deploying their young self-advocates. Sibling advocacy was gaining momentum too, with people using social media to share stories and support. Arts-based initiatives such as Tanpopo No Ye and The Good Job! Centre Kashiba provided high-quality, creative work opportuni
ties.
I met a representative of PandA-J, an organisation that provides information and training on human rights and abuse prevention to professionals and parents. Japanese families we met were shocked to learn about the human rights abuses of people with learning disabilities in secure assessment and treatment units (ATUs) and the effects of austerity on disabled people and their families in the UK.
Health inequalities exist in Japan as in the UK. Families shared similar concerns about the abuse of people with learning disabilities, particularly after the massacre of 19 disabled people at a specialist facility in 2016 (the 26-year-old perpetrator said afterwards that “it is better the disabled disappear”).
Stigmas and safety nets
Fujino had carried out research on the impact of having a disabled relative, and referred to the “family burden”, suggesting that there was still a stigma attached to being disabled. This concept of a burden harks back to attitudes in UK in 1980s. It felt uncomfortable to me. One impressive aspect of Japanese provision was that the government provides a safety net of financial and social care support (subject to eligibility) without the constant battles we have in the UK. There is an extensive network of day services and group homes in place, although Japan does not have a model of supported living.
Families had developed service provision and advocacy before the state stepped in. This struck me as a similar path to the UK’s, although self-advocacy has yet to gain momentum in Japan. In contrast, we are witnessing state supported services being rolled back in the UK, with some advocacy groups and families stepping into the gaps.
I returned from Japan believing more than ever that we need to challenge the destructive impact of austerity on the lives of people with learning disabilities and their families. The UK benefits system should exercise the same level of flexibility afforded in Japan, allowing people to retain benefits while being paid to gain skills. We can learn to be ambitious about creating jobs and partnerships with businesses and the public sector. We can save money and stress on endless reassessments when we all know learning disability is not something that is cured. And we need to value people again.
Highlights for me included watching Shun Omori gain confidence from meeting Ian Davies and being a member of the team. His mother said this research experience had encouraged him to start making more choices about his life. Telling his story about his work at th
e i-LDK Super College and showing us how to travel around Japan using Google maps on his smartphone had helped Shun to feel like he geniunely “belonged” in our team. One of the most valuable parts of the project was the power of being able to tell your own story. Davies shared his life story with the theme of belonging and not belonging to several audiences, including 60 trainee social workers. Many students said that hearing this enabled them to understand the meaning of belonging for the first time. Other people with learning disabilities in Japan have since requested that they too be supported to tell their life story, inspired by his account.
Our Anglo-Japanese partnership is looking to build on the exchange visits through further work on life stories. Japanese colleagues are hoping to start work on this for the first time. In the UK, life stories have been collected since the 1960s, but what is less well established is their use within services. As a result of the impact of telling Davies’s life story in Japan, we want to find ways to embed them as a foundation for genuine personalisation.
We feel privileged to have had this opportunity to gain an insight into Japanese advocacy and social policy. It has given us new ways to look at what’s going on at home. Altogether, it was an immensely rich learning experience.
Jan Sunman is a family carer and advocate who is passionate about rights and services for people with learning disabilities and families. Additional reporting by Liz Tilley and Jan Walmsley
